Mon, 13 Aug 2018 07:45:09 -0700WeeblyMon, 13 Aug 2018 07:00:00 GMThttp://www.awenestyofautism.com/blog/time-for-back-to-school-againWith the end of summer quickly approaching, most parents have both a sense of relief and dread. Usually by August, both kids and parents are ready for the routine that school brings, but, with the start of a new school year, there is typically apprehension about what the new year might bring. And if your son or daughter has autism, that apprehension might just be over the top. New teachers, new classes, new schedule is a whole lot of new, and until kids get in the swing of things, new can be incredibly overwhelming. Here are a few ideas that might alleviate some of that apprehension and help prepare your child for a successful start to the school year:

Go to the school a week before classes begin and visit your child’s classroom. If they have multiple classes, ask the school for your child’s schedule in advance and walk through the building following the schedule until your child feels comfortable with the routine.

Request a meeting with your child’s teachers so your child can meet their teachers before the first day of school and the teachers can learn about your child’s strengths and struggles.

Make sure the teacher knows weeks before school begins about any special accommodations your child needs. If they have an IEP or a 504 Plan, ask the teacher if they have received and reviewed it. Start that open communication before the school year begins.

If your child needs new shoes or clothes, buy them in advance so your child can get used to the feel of the clothes before school begins.

Contact the school’s transportation department and find out the bus schedule and the bus driver’s name. Ask if you and your child can meet the bus driver before the first day of school.

Create a social story for the first day of school and use your child’s actual teacher’s name and room number as well as real photos of the school so they can familiarize themselves with what to expect.

Ask the teacher if he/she has a visual schedule with the school day routine and if they don’t, ask if they can create one or offer to help make one for them.

Meet with the school nurse, the guidance counselor, the cafeteria workers, the front office staff and anyone else who might come into contact with your child so they get to know your son/daughter too.

Remind the teacher that "if they have met one person with autism, they have met one person with autism" and that your son or daughter is not THAT person, so, fill them in on who your child is and isn't and help eliminate stereotypes before the first day of school.

Get a big bottle of wine. Not for your kid, but, for you. The first month of adjustment is always a doozy for your child and for you. Wine helps.

Good luck to all the kids out there! Wishing them, and you, a happy, successful year full of acceptance and understanding.

"Bravery: Knowing the world doesn't always understand you, but, going out into it anyway."~The AWEnesty of Autism

]]>Sat, 28 Jul 2018 07:00:00 GMThttp://www.awenestyofautism.com/blog/worth-the-riskWiki defines risk as “a situation involving exposure to danger.” Most of us want to avoid danger. An Enter at Your Own Risk sign posted next to a rickety old bridge, might make most of us non-thrill seekers avoid a possible plunge to our death, so, we find another way to get where we are going. My son Ryan is a practical, non-risk taking guy and that is why there is no way he would cross that bridge. He would absolutely take a safer, alternative route and skip the bridge (and the risk) altogether.

Last week, when we were talking about friends and his desire to be “anti-social” as he calls it, I asked if that’s what he wants or if that’s what is easier. He took a minute to gather his thoughts. "I don't know if it's worth the risk," he said as he stared out the car window. My heart felt both happy and sad. I was thrilled that he was able to articulate his feelings so well, and sad that at almost 17, my son doesn't understand the joy and wonder of what it means to have, and be, a friend. To my son, trying to make a friend, feels almost as dangerous as that rickety old bridge, so, he finds other ways to get where he needs to go.

I tried to explain to Ryan that opening yourself up to friendship does make you vulnerable, but, having someone to confide in, to stand by you, to understand you and to love you, is worth the risk. Not ever really having that kind of friendship experience, he wasn’t convinced. I tried a different approach.

“Look at all the risks you have taken that have paid off. Musical theatre, select chorale groups and music camp.” Still staring out the window he said, “That's taking a risk at something I am good at. I’m not good at people.”

Understanding people and knowing who to trust and who is worth the risk is like crossing that rickety bridge with a blindfold; dangerous, scary, uncertain and in his mind, not worth it. Maybe this is why in most social settings he finds an alternate way around. Sitting alone, avoiding parties, not staying overnight at music camp and spending as much time isolated as he can, helps him to avoid the dangers of social blunders, language mishaps and misreading the emotions of others. One wrong mistep, one weakened board and down he goes. Crossing that bridge is just not worth the risk.

At least not yet.

My son's words struck my heart, and sat with me the rest of the day. I was overcome with both sadness and pride. Sadness that making a friend feels so risky to him and pride for not only his ability to recognize the risk of opening yourself up to someone, but, also that he felt safe enough to open himself up to me.

​Even though my son knows this bridge is VERY OLD (he points out my gray hairs regularly), he knows I am reliable and will always hold him up. One day, there may be someone on the other side of that bridge that compels my son to ignore the Enter at Your Own Risk warning and he takes a risk and crosses that bridge, but, until then, I will take his hand and help him find another way around.

And on the other hand, he is SO worth the risk.

]]>Sat, 16 Jun 2018 07:00:00 GMThttp://www.awenestyofautism.com/blog/pick-me-up-please-againSo, last week I slipped a little. Just a small stumble over something I didn’t see coming. I guess it was more like someone I didn't see coming. It was the keynote speaker at an autism conference I attended. Wait, sorry, that sounded like finger pointing. It wasn’t the keynote speaker, who tripped me, I tripped over myself. I got in my own way. Again.

Sure, what the keynote spoke about, what he said may have been what tripped me up, but, I’ve gotten fairly use to falling, hoping no one sees it, brushing myself off and jumping up again. This time was different. This time, I didn’t have the hands there that always pick me up, so I stayed down a little longer than usual.

The keynote speaker was a very respected autism researcher and he was fabulous and brilliant. When I saw all the science and research info in his bio, being the kind of person who took geology with all the college jocks so I could avoid chemistry, biology and any number of other “real” sciences (just kidding geologists), I expected to be bored and check my Facebook newsfeed. Boy, was I wrong. I was mesmerized and didn’t once check Facebook.

The science of autism and the research that goes into it is fascinating. We are just beginning to understand the incredible facets of the human brain, and therefore, we are also just beginning to understand autism. So, I sat in my chair listening, taking it all in and not really caring where my friends checked in for lunch that day.

As I sat taking notes and making a list of questions I planned to ask this incredibly brilliant researcher, he began talking about the causes of autism and that’s when I started to slip. I felt that same ache in my heart that I felt 13 years ago, that same doubt and wonder that slowly crept up my spine, that same guilt of not knowing how or why and what, if anything, I had to do with it. And just like that, I stumbled and was on my ass. Again.

I’ve been here before. Lots and lots and lots of time. What did I eat when pregnant? What was I exposed to when pregnant? What did I feed my son? What did I expose him to? Was it my genes or my husband's genes? How did it impact him and not my other kids? What caused my son's autism? It’s been a long time since I stumbled back here and it took me a little longer to get up. Did I mention that I was at a conference? Overnight with no kids? Plenty of time to stay on the ground and not get up, and with the one set of hands who always helps me up playing Fortnite in his bedroom 45 miles away, I allowed myself to stay down for a few hours. I hadn't been down that long for quite some time.

So, yeah, I stumbled. I wondered. I questioned. I blamed. I Googled. I fell. Hard. Again.

And as I lay there, surrounded in doubt, guilt, wonder and worry, my phone tinged. A text alert. I almost didn't get up. I almost didn't get it. After all, I had fallen and decided maybe a little wallowing alone in a hotel room was just what I needed. But, then I remembered, I'm not on this journey alone. People need me. My son needs me. I picked up the phone and for the first time since I had stumbled, the tears fell.

"Hi”. Two simple letters, one simple word that pushed me back up on my feet and reminded me that "how", "why" or "what" wasn’t nearly as important as "who". And “who” may have not been physically there to pull me to my feet, but, his simple “hi” was enough to get me off my ass and move forward. There is no time to go back and going back does not do him, or me, any good.

"Hi baby. I miss you." No response back. None was needed. He knows. My son knows that even when I stumble, even when I go back, even when I fall really, really hard, I will pick myself up and be there for him. Always. Sure, I may lick my wounds for a few days, but, I get back up and feel stronger from the fall. This wound licking is NOT because I wish my son were someone else, it is not because I think he needs "fixed" or "cured", it's because like any parent, I want the world to see him as I do, brilliant, gifted, funny and determined and unfortunately, that does not always happen.

Yes, I know, the science of autism is incredibly important as it leads us all to understand the what, the why and the how, but, for me, a mother loving a child with autism, the who is what matters most. The who is here, present and indescribably amazing. The who needs supports and resources to help others see how amazing he is and what he can offer this world. The who needs to be understood and accepted just as he is. The who needs me. And the who, my son, keeps me going forward and picks me up when I trip over myself and fall. Hard. Again. Thank God, because I’d never get up without him.

Thanks Ry for picking me up. Again.

]]>Thu, 10 May 2018 07:00:00 GMThttp://www.awenestyofautism.com/blog/my-wishes-for-you-this-mothers-dayIt's been almost 13 years since we first heard the word "autism". My son has come so far since then, and so have I. I remember all those years ago, the guilt, the worry, and the ignorance, I remember it well. It took me some time, ok fine, a lot of time, to get from there to here, here, where I am today. I am so thankful to my son who grabbed my hand and helped move both of us forward.

So this blog is for all you mothers who have just arrived to this new world of autism. One day you too will be "here", but, while you still linger "there" these are my wishes for you this Mother's Day;

1. A day filled with love, even if that love looks different than you expected.

2. A day without racing thoughts of how, when and why.

3. A day without scheduled appointments, routines and researching what to do next.

4. A day to enjoy what is and not worry so much about what will be.

5. A day absent of comparisons. Theodore Roosevelt once said, “Comparison is the thief of joy.” Teddy was spot on, so today, no comparisons, just joy.

6. A day without guilt and should haves, could haves, would haves. Guilt is Comparison's accomplice when it comes to stealing joy. Lock them up today.

7. A day for you to see your child like you did before you heard "autism". That child is still the same, that child is still there, so look. Look now.

8. A day filled with the wonder of seeing the world through your child’s eyes in a way you never have before. It can be a heartbreakingly, funny, difficult, awesome and beautiful world, but, it is now up to you to enter it. Walk through that door with your child today. They are waiting for you.

9. A day to appreciate and embrace neurodiversity. Imagine how boring the world would be without it?!

10. A day to be grateful for your support system of family, friends and other moms on this similar journey. You will need all of them (and wine), let them in.

Oh, and one last thing on Mother’s Day, and every day, as you travel this new journey with so many mothers who have come before you, I wish for you the gift of acceptance. I truly believe the best way to receive this gift, is to get to know autistic individuals, no one can offer you or your child more insight then they can. Remember, without accepting what is, you and your child will never get to what, and most importantly, who they will be.

And finally, my last wish for you is that no matter the day, you never, ever give up hope.

Happy Mother’s Day!

Grateful on Mother's Day, and everyday, to be their mom.

]]>Sat, 21 Apr 2018 07:00:00 GMThttp://www.awenestyofautism.com/blog/im-not-going-to-be-so-autistic​You know how we have those moments that no matter how much time passes we know we will always remember, not just the moment, but, everything about it? Where we were, what we were wearing, who we were with, etc. The day we heard the word “autism”, I remember everything about that moment. The smell of the rain that had just fallen, the shirt I was wearing that was sticking to my back due to the warmth of the day and my anxiety, the location of the empty garbage can in the psychologist’s office that I could puke in if necessay…I remember all of it. And I also remember thinking later, mostly because I was uneducated, I was scared, and I was in new territory, that there would probably be very few moments in my lifetime that would cause me such heartache and worry than that moment did.

Well, I just had another one of those moments (in my kitchen, on a cold day in April, wearing a Shenandoah University sweatshirt, with Ryan) and it hurt my heart so much more than that moment almost 13 years ago. The moment began with these words: “And this year I'm not going to be so autistic”. The words came from my beautiful son’s lips as he smiled with pride at the thought of not being "so autistic" and I was sickened looking for that psychologist’s garbage can again.

We were talking about tech week for Ryan’s HS musical rehearsal. Two of the rehearsals would be anywhere from 8-10 hours long, so, that meant they would run through the dinner hour. Of course, dinner was provided for the kids, but, since Ryan has a limited diet due to his texture sensitivities, I take dinner to him. Last year, we got the timing off and his milkshake was melted and his burger and fries were cold, and he was terribly upset, so I had to go get meal number 2. Some moms said to me, “Wow. You are a better mom than me, I wouldn’t have gone back twice”. I’m not a “better mom”, I'm just a mom traveling a different path than those moms.

In order to avoid another mishap like last year, Ryan and I were in the kitchen trying to come up with a plan, discussing different ideas for meals and how we could time it better this year when "the moment" occurred and those words were spoken with such pride, “And this year I’m not going to be so autistic.”

No. Just no. No, no, no, no. Dammit, NO!

Trying not to be “so autistic” is not something my son should have to ever strive for and saying it should not make him smile and feel some sense of accomplishment. Yes, it's ok if he is proud that he is more flexible, or takes pride in advocating for himself, or is pleased that he is planning ahead a little better, or feels courageous enough to try a new food, but, he should never have to feel good about being other than who he is...and being autistic is intrinsically how he sees, feels, understands and interacts with the world.

Back when Ryan was officially diagnosed, it was under the DSM-IV, so his actual diagnosis was Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS). “Pervasive” is the word you must understand. It means that autism impacts Ryan's neurology and how Ryan sees and interacts with the world. Autism is prevalent and inescapable in all areas of his life so he should never have to feel like he can be more or less autistic. His neurodiversity is an inherent part of his identity and he cannot be separated from autism any more than he can be separated from the color of his skin. He cannot separate how he exists from who he is and he should not ever think he has to.

Do most of you women out there wake up regularly and think, “Today I’m not going to be so female” or do you just get up and go about your day being female? Have any of you guys ever decided when the new year rolls around that this is the year you are going to “not be so male” or do most of you dudes start the year off with a new plan to be healthier, happier, but, still inherently male? The gender you identify with is intrinsically a part of who you are and that’s what makes you, you, so trying not to be who you are would be terribly uncomfortable and probably not something most of us even think about and certainly not something anyone expects of us.

For those of you who may not believe that autism is pervasive and intrinsic to the autistic person and see autism as a “disability”, let’s look at it this way then, do we expect people who are visually impaired to decide this is the year, this is the day, this is the moment that they should try and see better? Does the world think people with a physical disability should be less physically disabled today than they were yesterday? These individuals can’t look at their parents and say, “And this time, this year, this day, I’m not going to be so physically disabled” and Ryan and other individuals with so called "hidden disabilites" like autism, shouldn’t have to say that, try that or think that either. No one's disability or label should "define them", but, for the autistic population, their neurodiversity impacts all aspects of who they are and how they go about living their life and they should not ever have to take pride in trying to be someone else.

The reason Ryan's words, “And this year I’m not going to be so autistic” were such a profound moment for me was because in that moment I realized that there is still so much more understanding and acceptance that is needed, both for my son and the rest of the world. His pride in trying not to be "so autistic" is not for him, it's for the neurotypical world who still fail to accept and respect neurodiversity. No one has the right to deny who my son is and he should never take pride in trying to be more or less "Ryan". Hopefully, the more we educate others, the more accepting the world will become and then maybe one day Ryan will be more accepting of his neurodiversity and never feel like he shouldn't be "so autistic" when his milkshake melts and his fries are cold because honestly, as someone the world deems "neurotypical", cold fries piss me off too.

Ryan, being exactly who he is and a mom who is incredibly proud to call this kid her son.

]]>Thu, 19 Apr 2018 19:14:21 GMThttp://www.awenestyofautism.com/blog/i-cant-look-away​My 16 year old son with autism participated in his second high school musical theatre performance last week as a member of the ensemble. This is not just your typical, run of the mill production. The kids in our high school theatre program are so incredibly talented that many of the high school musicals blow away our local community theatre and touring companies. The cast, the pit, the crew, the dedicated teachers who direct and choreograph, the set and the costumes look like they belong in a theatre in New York City, not in a Pennsylvania high school performing arts center. And there among them, is my son, the teenager who struggles to fit in most places, except on that stage.

Opening night was last week and I sat in the audience in awe of all of it. The show, “Nice Work If You Can Get It”, runs for 5 days and of course I go to all five performances. Every night I swear this is the night I will watch the entire scene and not just focus on Ryan in the scenes he is in, but, I can’t seem to take my eyes off him. I sit mesmerized and in awe with a big stupid grin on my face and everyone else on the stage disappears.

With every costume change I see the little boy who melted down when the seasons changed and it was time for a different coat. With every beautiful choreographed, spot on dance move, I see the little boy who ran with an awkward, unbalanced gait. With every perfect note that comes out of his mouth I see the little boy who couldn’t find his words to tell me if he was hurt, angry, scared or sad. With every photo he poses with cast mates, I see the little boy who always played alone.

I try, I swear, to watch the rest of the cast, the leads who work tirelessly learning all their lines, songs and dance moves, but, there, in the ensemble, is my son singing, dancing, smiling and honestly almost unrecognizable from the teenager I see struggle to understand the world off the stage. Yes, I realize, he has a phenomenal memory so knowing where he is supposed to be on that stage and exactly what he needs to do is easy for my son. I also know that with the gift of perfect pitch, hitting the right note in each and every song for him takes little effort too. And yes, I get that having a script to follow allows him the confidence to behave or “act” a certain way that he knows is “right” and will not be dejected for getting it wrong, but, still there is this magnetic pull that does not allow me to disengage.

From my seat in that performing arts center, I am transported back to a time where I never could have imagined this scene being played out before me which makes every note, every dance step, every confident bow all the more glorious. And this, is why I can’t look away.

For many of you walking a similar path with older kids or adult children, I know you get it. I texted my best friend last night, who didn’t know Ryan when he was little and really, really struggled. I told her I would love to take her back in time so she could meet that same little boy I speak of and really, truly see how far he has come, but, also, so she could remind me (when I need it) just how far he will go.

My 1920's gangster.

]]>Wed, 28 Mar 2018 07:00:00 GMThttp://www.awenestyofautism.com/blog/why-my-sons-words-matter-so-much-more-than-mineI will never fully understand autism because I am not autistic. To say I "get it" is not truly accurate. And this is proven to me time and again. As much as I long to get inside my son's brain to see what he is thinking, how he is feeling and how to help him when he is struggling, I will never quite understand how autism impacts his life. That is why when we have moments where he shares any or all of those things, it feels like a gift he has so graciously given to me, if only for a moment.

Just last week, there were two occasions where he really let me in and helped me to see him, I mean really, see him. One of those occasions happened when we went to see my best friend's little girl as a hyena in her first musical performance of the The Lion King. She wanted Ryan to be there, since in her beautiful 9 year old mind he is an expert as a high school theatre kid. And he wanted to go because he loves her and loves being seen as an "expert".

Well, the audience was loud, kids behind us were talking and kicking our seats and it was hot. Like really hot. When our gorgeous hyena asked Ryan if he liked the show he barely mumbled a "yes" and there was zero excitement in his voice. I worried that this sweet girl, who understands autism more than most 9 year olds do, would be hurt by his lack of exuberance and quite honestly, I was a little irritated, but, I didn't let Ryan know just how irritated I was.

The next day, I asked Ryan what was bothering him so much at the show and why he struggled to give our sweet hyena the props she was looking for and he said, "It was so hot in there and when it's hot, my brain doesn't work very well. It's really, really slow and makes it difficult to talk." Of course I felt ashamed because once again, I didn't get it. I misinterpreted his overloaded sensory system for rudeness, something I preach to others NOT to do. Sigh.

I apologized to my son. Again.

My second glimpse into my beautiful son's mind came in the form of a research project he had to complete for his English class entitled, "The Effects of Autism on the Brain". With Ryan's permission ("Please share it with everyone you know.") Here are a few excerpts of his project which he presented in front of 28 high school sophomores (he is braver than I could ever be).

"If you ever look upon a gathering of people, you may notice that there is one person excluded from the gathering, and that person may be carrying out unusual bodily functions or trying to avoid the nearby mass of people. You may think to yourself, “is that person okay?”, and neglect the possibility of that person having been diagnosed with autism.

How do autistic people view society?

1. More often than not, individuals with autism are most likely to see the world as an unstable place, full of utter chaos. They witness devastating, chaotic events, such as acts of terrorism, or loud noises and bright flashing lights, and taking the idea of the autistic brain functioning slowly, it is too much to take in at one single time.

2. Most autistic people prefer to live in a world where their lives are perfect. In society, perfection is impossible to achieve, and this is where the autistic person’s vivid imagination serves as a benefit. They can imagine that they live in a world where everyone is friendly, and there is little to no hatred whatsoever, and everything is perfect.

If you didn’t already know, I, Ryan, am also under the effects of autism. Whether or not you’d rather use the terms “individual with autism” or “autistic person”, one with autism still fits in society the way a normal, non-autistic person does. Some people who are not diagnosed with autism believe that this is not true, and that instantly gives away the fact that those people probably don’t understand what autism is. If we can start to teach people about autism, as well as solve problems that autistic people greatly oppose, people with autism can fit in better, live happier lives, and forever be considered "Different, not Less​".

His words are so much more powerful than mine could ever be because he is autistic and I am not. Which is why I have to listen, I have to not jump to conclusions and I have to keep trying to understand and accept behaviors that may be unexplicable to me, but, make perfect sense to him. I, too, wish we lived in a world "where everyone is friendly and there is little to no hatred whatsoever", but, until we do, I will try my best to accept what I can't understand and help others understand too. And even though I may blow it regularly because I am not autistic, my son knows that my love is unwavering, unconditional and unflappable, even when I am "horribly annoying and ridiculous".

Just a few of his words, overshadow thousands of mine.

]]>Fri, 23 Mar 2018 12:55:40 GMThttp://www.awenestyofautism.com/blog/how-to-befreind-kids-with-autism-posterHey everyone, I know folks were looking to duplicate the poster I made for my local schools so here it is. I just ask that you respect my work by keeping The AWEnesty of Autism copyright at the bottom of the poster as well as give my niece Morgan McAfee the props she deserves for making my words and Ryan's heart look so cool.

As always, thank you for being here, for being aware, accepting, kind and AWEsome!

]]>Fri, 09 Mar 2018 18:22:15 GMThttp://www.awenestyofautism.com/blog/the-really-scary-f-word-futureIf I have any regrets since we first heard The A Word, it would be the endless hours I spent worrying about the F Word, no not that one, the F word I’m referring to is much more caustic to my heart and my ears than the one that rhymes with truck. The F word I’m talking about is future. Yeah, THAT F Word.

You get it don’t you? The future is unknown, the future is shrouded in what if’s, the future does not provide a money back guarantee if you aren't satisfied, so, the future scares the hell out of me. And with all that uncertainty and all that worrying, that one F word, caused me to miss so much of today, worrying about tomorrow.

Look, I know I can’t bury my head in the sand to hide from what scares me, even though I really, really like the warmth of the sand and the way my head feels when it’s shrouded in the darkness of denial and ignorance while buried there, but, I can try to appreciate the here and now while planning for the there and then. Every so often, when my head is nicely buried in the sand on a beautiful beach somewhere and the scary future is unable to find me, there are moments that yank my head up out of the sand and I come face to face with the future.

The most recent moment was when I was asked to complete a parent survey for “transition planning”, for Ryan’s FUTURE. At first I thought nothing of it, I opened the survey and began to fill out the easy stuff, you know, his name, date of birth, graduation year, etc, but, then it got scary and since there was no sand for me to stick my head in, I considered sticking it in a really full glass of wine instead. I thought, if I can’t hide from the future, maybe I could at least numb myself to it a little bit.

I didn’t though. I faced that damn future (and that survey) totally sober and sand free and it sucked. You see, as long as Ryan is sheltered in the protective educational system bubble, I know that not only will his teachers look out for him, but, by law, they HAVE to support him, educate him and keep his best interest at heart. That nice bubble will burst once the future sneaks up, grabs him and chucks him into the deep end of the adult pool and there won’t be nearly as many life preservers. And there won’t be sand deep enough for me to bury my head into.

Questions like, “Will he be able to accept criticism from a future employer?” and “Does he or will he be able to talk in a respectful tone at all times?” At all times? I mean, come on, we have all had that boss that we KNOW we were smarter than when we came out of the womb and it’s very, very hard for those of us who understand the social norms of the job hierarchy to remain respectful to those kind of people, so will he talk in a respectful tone "at all times"? That depends on how ignorant his boss is. There wasn’t a box to check for that option.

There were more questions about independent living, handling money, transportation, and relationships. Since there was no sand in my kitchen, I found myself staring at that bottle of wine, but, it remained corked as I finished the survey. Most of my answers involved worry, worry, guess, worry, worry, hope, worry, worry pray.

I realize that none of us know what the future holds. And whether you have a kid with autism or a neurotypical kid, the future does not provide any guarantees, any reassurances or any promises for anyone, but, for some who are seen as “different”, who don't quite "fit" what society expects, treading water in that deep end of the adult pool has to be exhausting. And that thought pulls at my mama heart and makes me want to stick my head back in the sand (or in that really full wine glass).

But, I don't. You know why? Because the future is coming, whether I like it or not. Yes, I can appreciate the here and now, but, I can't be blind to the there and then. My son is two years away from the deep end of the pool and sticking my head in the sand isn't going to prepare him for any life preservers that he may need when that protective educational bubble pops. He doesn't have the luxury of the sand or the wine, so neither do I.

So, I finished that damn transition survey with little to no guarantees of what The F Word holds for my son and I crossed my fingers for a future that is filled with hope, neurodiversity and acceptance. Then I left that survey and my worries of tomorrow behind on my laptop and checked into the present, where my son currently lives, so I wouldn't miss another minute of today.

Ok fine, maybe it wasn’t your actual seat, at your actual desk and I didn't have a sea of faces staring at me waiting to learn, but, I still know what it feels like to sit in that seat to wonder…to question…to not understand. And although you may have hundreds of faces watching and waiting for you to figure them out, there is one face in your class that is familiar to me and I have had that same face looking at me waiting too. Waiting and expecting you to get it, to get him.

There was a time when, like you, I didn’t understand autism. A time when I didn't understand how autism impacted him in ways that seemed questionable. Does his new winter coat really “hurt” because of his sensory struggles or does he just not want to go outside? He can recite an entire movie, yet, he can’t tell me about his day, so is finding his words really that difficult or does he just want to watch Spongebob instead? Are changes in routine really THAT hard and he can't bear the thought of going to grandmas on a weekday because we only ever go there on weekends or does he just not want to give up Minecraft this afternoon?

Is it all really autism?

I was you. I was ignorant and as his mother, it’s shameful to admit, but, at times, I was a doubter. Yep, there, I said it and I’m betting if you haven’t said it, you have thought it. In fact, I was so skeptical at times that I used to ask the therapists, how do I know where autism ends and his stubbornness begins? The answer: you don’t.

There is no way to tell where my son’s autism begins and ends. Autism is not a continuous line with a start point and a stop point that allows you to see where it ends and where other traits, traits that may seem like stubbornness, laziness, carelessness, or even rudeness begins. Autism is intertwined in all that he is and all that he does. It does not define him, but, it is a part of him and there is no on or off switch. There is no way to really understand why one day he seems “checked in” and other days he seems “checked out” and because of that, my son wears a cloak of competence right over top of the five Hollister shirts he wears every week. That cloak can be suffocating to him and confusing to you.

How can he do a task one day and not the next? I mean, if he can read this book and write this essay, why can’t he read that book and write that essay? If he can spend hours focusing on Minecraft, but, can’t pay attention to your lecture on the Civil War for five minutes, is that autism or is he just apathetic? If he is mumbling or scripting softly to himself is his sensory system overloaded because the kid next to him wore too much cologne today or because he doesn't give a damn about finding the area of a quadrilateral? If I had the answer, I would be rich, my kid, and kids like him, wouldn’t struggle and you wouldn’t need to open a bottle of wine at the end of the school day.

Bottom line is I have to trust him, I have to believe him and I try not to doubt him because he is autistic and I'm not.

I will never know why things that were easy yesterday are hard today. Could it be the new socks he is wearing? Could it be the smell of the new floor polish the custodian used last night? Could it be your vibrant patterned shirt that is distracting him? Could it be the two hour delay that changed the schedule or the fire drill that disrupted his work? I don’t know, and honestly, he might not know either, but, because of that cloak of competence, it leads you to wonder…is it all really autism?

Don’t get me wrong, I have no doubt that there are times throwing out The A Word might benefit him, might help him take the easy path, because honestly, who among us doesn’t want easy the majority of the time, but, just like I have not really sat in your seat, you haven’t sat in his. And neither have I.

We have to trust him, we have to believe him, and we must try not to doubt him because he is autistic and we are not.

Many autistics do not approve of the puzzle piece as the logo for autism because they do not believe there is anything missing or puzzling about them. The logo was created by neurotypicals for neurotypicals. If you ask most people with autism, they think YOU are the mystery. And as a student, most probably don’t care if you figure out autism, they just want you to figure out them. A task that is easier said than done with a sea of faces waiting for you to get each and every one of them.

I don’t have the answers for you. Sorry. My kid might though. Rather than ask why he didn’t complete the assignment, ask what he might need to help him complete it. Rather than assume he is being lazy, ask if he didn’t understand the homework or did he just get sucked into killing more creepers in Minecraft and forgot to do it. You might get a straight answer, you might not, but, if you ask, he will at least know that in the sea of faces staring at you for 52 minutes, there is one face that is grateful you tried to really genuinely see him.

I was there once, in your seat, and some days, I still am. I empathize with you, I legitimately do. So, scooch over, and let me sit down. Maybe between my son, you and me, we can "get" him together, but, we have to trust him, we have to believe him, and we must try not to doubt him because he is autistic and we are not. As his mom, I am always here to help him and you, so, please don't ever hesitate to ask me how to get from there to here or to invite me over when you do open that bottle of wine.

Thanks for listening, thanks for trying, thanks for teaching.

Ryan's Mom

One of many teachers who trusted him, believed him and did not doubt him.